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Monthly Archives: June 2013

Congrats to sumy.kola@gmail.com!!! 🙂 You won a Just Breathe T-shirt!!! WOO-HOO! I will be emailing you for all your sizing, shipping and all that jazz. I’m so excited for y’all! Keep in touch for more contests and posts! Also, I’m putting together a list for the Mind Over Matter shirts (we might just have enough) and if you want one of those shirts then get your name on the list by emailing me at haley.ann.92@gmail.com I will be publishing it on here soon to make sure that everyone who wanted 1 (or 10) is for sure registered for that many!! 🙂 Thank y’all so much for participating! Keep reading and have a LOVELY Saturday!!

Hello my loves! Just a real quick reminder that you have until MIDNIGHT TONIGHT to enter yourself in the contest by following my blog!! 🙂 Also check out putting yourself on the order list for a Mind Over Matter shirt by emailing me at haley.ann.92@gmail.com

Also my lovely photographer finished this poster yesterday and it’s our job as the PH community to share and get it KNOWN! Pin it, share it, tweet it and post it. Lets get it out there folks!! 🙂

So lately I’ve noticed that every Monday I’ve given y’all blog updates. There is so much going on, so that’s what this one will be about as well! 🙂

Thank you so much to all of you who have reached out, contacted me, followed the blog, commented and everything else. It is FANTASTIC. There are no other words to describe that. As far as the Just Breathe shirts (the lungs); I unfortunately cannot sell them right now. However I have plenty to give away…SO keep your eyeballs glued to the blog for upcoming contests! There will even be family contests where a family pack will be given away! Sooo the more you read and stay in touch, the better chance you have at winning a shirt. 🙂 ALSO! Don’t forget to check out the shirt that we are actually collecting names for to SELL, the “Mind Over Matter” shirts. You can read more about that with the link below OR under the SHOP tab. Moving on!

I am a complete stooge and forgot to do Survivor Sunday like FOREVER ago. :O I can’t even believe I forgot to do such important posts. haha. More about Survivor Sunday, it is the FIRST Sunday of every month that I will post someone else’s story with their PH! (whether its them or their family member) If you’ve been chosen for a Survivor story, you will receive a lung shirt! Woohoo! Want your story heard? Email me at haley.ann.92@gmail.com *Survivors are chosen at random in a drawing*. 🙂

Sooo there is all that crazy info for the week! The song for this week is the amazing Sixteen Candles by The Crests since its my biiiiiiirthday tomorrow! No, I will not be sixteen, however I just love this song and think everyone should get to hear it on their birthday. It is fabulous. Stay in tune this week, keep reading and don’t forget to enter yourself in the competition by FOLLOWING if you haven’t already done so! Share with friends, family and patients as well. Have a fabulous week y’all!

Thats right, my very first contest! I’m so pumped y’all so you definitely should be!!! My birthday will be on Tuesday and of course the rest of the week I work. So while I’m celebrating and staying busy (and blogging) you should be following. Not only because of all these posts help you but because you’re entering yourself in a contest when you follow!!! On FRIDAY, JUNE 28TH ALL FOLLOWERSwill be entered in a drawing and chosen randomly for a Just Breathe shirt! I’ll get in contact with you for sizing and it will be shipped that Monday. How EXCITING! I even have YOUTH sizes available so tell all family, friends and patients.

June is a fabulous month. Stay tuned for updates, posts and of course there will be more contests to come. 🙂 Not all will be so easy, so take a shot at this one while you have it! ENTER NOW and Good Luck! 🙂

So unless you’re living under a rock, obviously its summer. With Pulmonary Hypertension, this season can wear us the heck out. From being on our feet, traveling, the heat…It’s just a mess. Also we have to think ahead when it comes to our health and being away from our doctors. So what exactly should our packing list look like when we’re getting ready for our summer vacation and random traveling? Oh honey. Lets begin.

1. MEDICATION SUPPLY

This should be the first thing we stock up on. Whether its pills, IV Remodulin or anything of the such, you should have a plentiful if not more than enough supply just in case. The traveling pill cases are the best because lets face it, stupid bottles take up too much room. It also gives the opportunity for them to get stolen and seeing as how bottles have all your personal info displayed, it’s not such a good idea. As far as IV Medication goes, I’m truly sorry I have no experience with this. You should know what to do and if not, contact your physician. So yes, traveling pill case? Check.

2. OXYGEN

I don’t care if you’re going to the mountains or good ‘ol granny’s house…oxygen should always come. You never know when you’ll get the “heavy, dull, tight or full” feeling and will need it. It’ll also help with headaches and exhaustion. If you’re flying somewhere you must have an oxygen concentrator machine that is specially designed to go into the air with you, so you can breathe when your ridiculously high in the air. Make those arrangements with your oxygen supply company. It’s amazing how much oxygen we don’t realize we’re getting until we put those tubes up our nose. I take at least three tanks with me and remember to treat them with care! You NEVER want to drop an oxygen tank. This is a chemical, it will explode. Sooo, O2? Check.

3. PAPERS AND LEGAL DOCUMENTS

When traveling by plane with that funky special oxygen machine, you’ll need papers explaining why you have it to get on the plane. Check on that with your oxygen supply company, the airline and your doctor. I know, so much work. Continuing on, It’s always a good idea having papers or a card in your wallet explaining your disease, your medication, your doctor and your personal info if a medical emergency did arise and you have no way of communicating. ALWAYS have that on you and make sure people who are with you know it’s there. Just sayin’.

4. WETSUIT

This is mainly for people who do have the 24/7 pump. We don’t want to miss out on swimming!! That’s one of the best parts. Wherever you’re going, if there is swimming/water involved, think about steps to protect your tubes.

5. YOUR SURROUNDINGS

Always be aware of where you’re going and what will be available to you. Know about hospitals and things like so. It sucks to think of the worst possible scenario but at least you’ll have been prepared.

PH does not have to be some heavy baggage you have to lug around on your vacation. When you treat it how its suppose to be treated and take all the steps, it’ll become more of an invisible passenger. Prepare yourself and enjoy your summer. As for me? I’ll be in the mountains. But don’t worry, I’ve gone through this list many times 😉

Hellloooo my loves!! Today has been fabulous. Why might you ask? Well it rained early this morning and then AGAIN in the evening and that is amazing for this dry Texas panhandle. Then we had Rocco Ricardo’s follow-up appointment after his echo to see what is wrong with his heart. Turns out, his heart is great (the left is slightly enlarged) but he has severe asthma which we will have to treat of course! But we are so happy he wont be dealing with heart failure! 🙂

Moving onto more amazing news, new shirts are going to be printed soon if you are interested in looking cool. This new design (Mind Over Matter) will be on a shirt super soon! Whats the catch? Well, in order to print all of everyone’s orders we have to have at LEAST 24. Sooo if you want to own this shirt for $12 of your money send your name (first and last) and official email address to haley.ann.92@gmail.com I will have a proof of the shirt soon (It will show exactly what it’ll look like front and back). I DO NOT NEED PAYMENT OR SIZING RIGHT NOW. I’m just trying to see if we will have enough orders to actually place them. So if you are SERIOUSLY interested email me! The proofs will be up within a week! Get excited folks. Also don’t forget to check out the song of the week, Howlin For You by the amazing Black Keys.

Oh, TEXAS HEAT. Not only does it make breathing and exhaustion worse but you can always count on your ankles puffing up too! Seriously, I think this is one of the number one things I hate about PH. I hate swollen ankles!! Just remember, you can tackle these things with lasix pills, compression socks and putting your feet up! Until then, you’ve got to get creative disguising them because lets face it…no one not even you want to see someones ankles exploding out of sandals.

Back to the word Texas. I was born and raised here and it’s definitely home. This big state comes with a big personality and we love what makes us Texans. We are the most identifiable state and the best. 😉 Continuing on, being the true Texan I am, I own ACTUAL cowboy boots! It cracks me up to walk into stores and see these makeshift “boots” that are supposed to look western when the mysterious material used to make them are as fake as your flea market purse. The Flea market is good for some things, but not your boots. True boots do not have diamonds, zebra and leopard but simplicity and durability to complete their purpose…stomping around in the Texas dirt. You want the true definition of shit kicker? Well hey, you came to the right place. The boot was designed obviously for farming and ranching purposes and now it’s transformed into style as well. When done tastefully, cowboy boots looks amazing! These are the pair of boots I already own and then I’ve shown you the ones I will be purchasing soon. My favorite brand? Chippewa, Tony Llama and Justin. If you want a more harsh ranching, ropin’ and riding style, go with a square-toed, saddle heal boot (My first pair). An easier kind to style is of course a pointed toe boot giving you the more girly edge (As seen below). Always go with a saddle heal! However, I’m sorry, I hate bling cowboy boots. Pointy toe does not give you permission to make those things look hideous.

Square toe boots should always be put with BOOT CUT jeans, and pointy toed can go with jeans and even dresses. And if you were considering shorts? Approach with caution folks, because boots and hoochie shorts might get ‘ya picked up and drove to the boulevard where they’re gonna think you belong. Its summer and if you’re dealing with heat and swollen ankles, crank out your inner Texan and find a pair of amazing boots and cover those babies up!!! These are a classic and timeless piece of fashion that should be in your closet no matter what. Where can you find them? Check out Cavenders Boot City or just travel to Texas in general. 😉 Happy Fashion Friday y’all!!!

Hellllloooo Strangers. Yea, its been over a whole month I know. With family issues, to the end of school, to my health…my time was definitely all over the place and limited. BUT, school is out, everything is resolved and I’m back. 🙂

A little over a week ago I had my first episode in over a year and a half. By episode I mean my body not being able to get oxygen through fast enough, my heart rhythm got chaotic, I had literally no oxygen getting anywhere in my body (including my brain) so I passed out. Luckily I was at home and not alone. How did it happen? Well, I haven’t been following my medication as closely, I had little to no sleep and I had merely bent over to grab my cat. It was insane how fast it happened with so little physical activity. An episode is a very quick and terrifying experience because there is such an immense amount of pain running through your body and there is nothing you can do about it at the time. Your body literally just has to shut itself off in order to relax and start over. The “shutting off” is the scariest part. You don’t know it’s happened until you’re waking up from it. It’s almost like a weird dream and for some odd reason you’ve lost touch with reality around you having no idea where you’re at and why. After most of my episodes I’m usually able to catch my breath and I go on about my day but I’m careful. This episode was very different. My toes were a blue/purple color and I had to sit a few minutes in the chair I had passed out in, not even having enough energy to talk. Standing was very hard also, and I barely made my way to the front of the house to get my dad’s attention.

Credit to Bailey Dale Photography

I guess it shocked not only me, but my friends back into the reality that I can’t just do whatever I want with my PH. I still have to follow the rules and be consistent to be healthy. Usually, its other people we get mad at for not seeing our disease..but sometimes we forget its there too, until it almost kills us. Be careful and consistent friends. We are strong yet fragile beings.